What is Patient and Family Engagement?

I recently participated in a nationwide (not the United States) healthcare IT planning effort and one recommendation was universal availability of patient portals.    Several reviewers commented that patient portal is a loaded term - it implies that clinicians control the data and patients are given a view into it.   One person said, “that’s so 10 years ago”

BIDMC has been working with patient/family shared medical records, Open Notes and various consumer-facing apps since 1999.      Over that time we've discovered that patients typically do not want raw data, they want something actionable - the tools necessary to assist their navigation through the healthcare process.

A few years ago, Adam Bosworth, the leader of Google Health and later KEAS, met with me to explain his journey with patient and family engagement.  He spent a few million in venture funds to build a website that helped patients understand their lab results.   Patients visited once and never again.   He then spent a few million creating online care plans.  Patients visited once and never again.  He then spent millions creating a social network for healthcare that enabled teams of people to come together to support each other’s wellness.   That worked!

Our challenge is that we do not know precisely what patients want.  It would be hubris for any IT leader to speak for all patients.   We need to try many different technologies and let the patients decide.

My friend e-patient Dave pointed out in a recent post that my comments about downloads sounded very patient unfriendly.   I explained that the context of my comments was a reaction to the Meaningful Use requirement for View/Download/Transmit.    I completely support the notion that patients and families should have fluid access to all their data, but in 2014 when the Meaningful Use Stage 2 regulation was written, it felt too early to dictate just how that should happen and I commented that download and transmit required more thought.

I made the comment that no patient at BIDMC has asked for the CCDA download of their medical record, a raw xml file of data, since there are few tools that make such a download useful.  Patients  do ask for improved healthcare enabled by technologies that turn the data into wisdom.

Now that it’s 2016 and we have more experience, we’re seeing the emergence of apps such as Apple’s Healthkit and CareKit that put the patient in charge of healthcare data downloaded to their phone.    I wrote this about HealthKit's  ability to make View/Download/Transmit truly useful to all.    We’re releasing our first HealthKit/CareKit app and here’s a description of some of the “data spigot” features:

“Every patient has a customized care plan that is seamlessly synced from the electronic medical record via FHIR interfaces.  All outpatient medications are listed and updated in real time when a provider makes a change.  Patients are encouraged to adhere to their prescribed medication regimen and can also track their intake of “as needed” medications.  Providers define a care plan of non-medication activities that are part of a patient’s treatment.  These may include diet, exercise, or special instructions.

An essential part of staying healthy is the plan and thought process laid out in the health care providers’ notes.  All too often these are hidden in the silos of individual electronic health record systems.  BIDMC@home will harness the capabilities of iOS 10 HealthKit Health Records to serve as a secure, patient controlled, shareable database of medical records.  Under the umbrella of the Open Notes initiative pioneered at BIDMC, patients will be able to view and download their notes from BIDMC, transforming their phones into true personalized health records, and giving patients control of how their health data is shared.”

The BIDMC approach is to create application programming interfaces (APIs) using FHIR for structured data, unstructured data, and images that enable an ecosystem of crowdsourced apps to put the data under patient control.     In my discussions with e-patient Dave, he pointed out that FHIR does not yet include every element in the health record.   He's right but we need to pick some standard for information exchange and I believe FHIR is our best hope for data liquidity.    Today it includes the Meaningful Use Common Data Set and with every HL7 ballot its completeness will improve.

If anyone interpreted my comments about downloads to mean that patients don’t want shared medical records, I apologize.   I meant to say that I believe patients want more than raw data - that they want tools that help them more easily interact with the healthcare system.    As BIDMC moves beyond portals to patient controlled apps, we hope to make that happen.

In the meantime, we do make the Meaningful Use downloads available in our patient portal, Patientsite for those who want the CCDA-based XML summaries of each visit.   We also have the tools to create a download of a patient’s longitudinal record in the CCDA XML format upon request.    We’re all on this journey together and just as the early Blackberry was replaced by the modern iPhone, I’m guessing that CCDA view/download/transmit will be replaced by apps that deliver great functionality to patients from APIs for data access.